Follow the journey of our sweet little micro-preemie Thurston........
When he shall die
Take him and cut him out in little stars
And he will make the face of heav'n so fine
That all the world will be in love with night
And pay no worship to the garish sun.
~William Shakespeare, Romeo and Juliet

About Me

I am a stay at home mom and aspiring vintage seamstress interested in preserving and bringing back vintage fashion through the use of antique patterns. My years of interest include the Edwardian era through the mid 1930's.

Thursday, July 1, 2010

Breathing lessons.....17 weeks actual...4 weeks adjusted

So before I update everyone, I thought I would explain some terminology for everyone to understand, especially dealing with Thurstons lungs as this has been one of his biggest obstacles to date. And if you are a medical expert, feel free to correct anything I am saying, as this explanation is filtered through my rather scattered and disorganized brain :)

We breathe in 21 percent oxygen and if we are breathing that 21 percent in correctly, our blood saturation should read at around 100 percent. Our saturation changes when we run, if we are ill etc. Anything that basically impedes our ability to breathe in enough oxygen.

So Thurston's saturation levels are set between 87-94 percent(instead of 100 percent). They keep the saturation levels lower on him for many reasons(so his rop does not progress, to try to wean his oxygen levels down etc.) Because Thurston has BPD(I will explain this in another post) due to both his prematurity and from being on the vent, his lungs are damaged and that damage has caused inflammation and cannot hold as much oxygen as normal lung tissue can. So his oxygen percent runs much higher than 21 percent in order to give him enough to keep his saturation levels up. Right now he is needing anywhere from 40 percent to as high as 80 percent oxygen. The goal here is to get him down to needing only 21 percent, then he can lose all of the oxygen and just breathe in normal air like you and me.

The other complication here are the different equipment that administer the oxygen. At first, Thurston actually needed a vent, which pretty much breathes for you as his lungs were so immature, he was unable to breathe on his own. We were able to wean him off of the vent and onto a cpap which kind of helps him breathe by inflating his lungs.... for example giving him 15 "breaths" a minute etc. Now he is on High Flow nasal cannula which gives him oxygen at a high pressure which helps to push the oxygen into his lungs. Thurston is breathing on his own but is getting alot of extra help. Next is to try and get him down to a Low Flow to where he is really getting just some extra oxygen, kind of like someone who has emphysema that you see walking around with an oxygen tank. Once he gets on 2 liters of low flow he can actually start eating orally with a bottle/breast and this will be the next step in getting this poor kid home.

Right now he is on 5 liters, or high flow and he has not been doing great on it and still needs 50-80 percent oxygen(again 21 percent being the goal to move to 4 liters, then 3 liters, etc.) to keep his saturation levels between 87-94.

He is now 4 weeks old adjusted, a one month old baby, who is missing out on a TON of development by still being in the nicu. The longer he stays there, the more at risk he is at of falling further and further behind. The longer his oxygen stays high, the more likely he will need a g-tube to feed him(after a while babies lose the ability to suck and swallow and will need a ton of help later on if they don't get practice)a ton of physical and occupational therapy, not to mention intellectual delays from not being stimulated like a normal baby should. They do everything they can at the hospital and Chad and I go as often as we can, but with no family here to help us out, it is just not enough. I am also a firm believer that neurons are formed even just by holding/breastfeeding, smelling from a baby/mother closeness perspective so he is missing out on the 24/7 that I would have given him if he had been born full term or even if he were like most "normal" preemies who usually go home around their due date.

so having said all of this, the doctors thought they would try giving him another round of steroids. He had one round of steroids at 4 weeks old(I will regale you with that story when my mommy comes and I can backtrack for you)that got him off of the vent and on to cpap. So it was successful. The steroids basically are an anti-inflammatory drug and by decreasing the inflammation in the lungs, it helps the lungs to hold on to more oxygen, thereby decreasing his oxygen needs. It is not without its risks, as pretty much EVERYTHING during this entire process has always seemed to be the lesser of two evils scenario, but we all felt that the benefits(getting his oxygen levels down which will eventually get him closer to going home)outweigh those risks. We are not sure if this round will do the trick so we have to wait and see and if in a couple of days it does not seem to be helping they will take him off of it and then we go to plan B or C or D etc. So please pray that it works!!!!!!!

Thurston is now over 6 pounds a little chunk!!!! One of the nurses calls him her "fat daddy". We LOVE that nickname. He is really acting more and more like a newborn. He looks at you and his environment. He is not really smiling yet(just those passing gas smiles) and again, he might develop later than most kids but when he does crack that first real smile, you all will be the first to know and we will have a huge gigantic enormous picture for all of you to see. I will also be posting more photos and backlogging here as my mommy will be arriving in Austin tomorrow. We cant wait to see grandma or AMA as she likes to be called and it will be the first time for her to meet her grand baby so I know she is very excited as much as we are. Hell, I feel that once she gets here, that I can finally breathe a little better myself !!!!!!

Stick in there...things really do get easier...if the o2 is one of his biggest concerns then when you get him home things will be cake. As for the developmental stuff...It is very frustraiting, Ayden didnt come home til he was 8 months old and had to wait another month from there before he was even allowed to do tummy time...You will be amazed at how much they change once you get them home....developmentaly wise and personality wise...NICU life is horrible but things do get easier!